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TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 1 week ago #48973

  • DelnStyle
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Would taking probiotics and potassium pills be a worth while experiment?

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Questions for Those Experienced with ITP 4 years 1 week ago #48974

  • Sandi
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I don't think either would help platelets, but they can be beneficial for other reasons. If you take potassium, you should be aware of what your level is when you start and have it monitored.

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Questions for Those Experienced with ITP 4 years 1 week ago #48975

  • Sandi
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Okay, I just read more about what you wrote, Deln. You're assuming that you have a destruction problem that 'will work itself out'. What if you don't? What if you actually have a problem with production that won't work itself out? There is no way to know which problem you have...it could be both. You want to put yourself through all of these meds hoping that ITP will just go away while you're doing it. They are all band-aids, every single one. No treatment is known to actually be a cure, only a treatment that may or may not work.

I also wouldn't be too secure in the fact that IVIG will protect you completely from infection. The immune system is a large, complex thing and there are many aspects to it. IVIG may reduce the frequency or intensity of an infection, but not 100%. Do you never get sick?

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Questions for Those Experienced with ITP 4 years 1 week ago #48977

  • DeeDee Marie
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Deln,
I fairly sure I remember Caroline Kruse (Executive Director of PDSA) saying she has CVID, too. She was diagnosed a few years ago. I was at the PDSA Conference last year and she talked about it. And, I think she gets the IVIG treatment for it.

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Questions for Those Experienced with ITP 4 years 1 week ago #48978

  • Rob16
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Over the counter potassium pills are limited to 99 mg of potassium, about 2% of the RDA, because excessive potassium can be very dangerous for some people. It is easier to get potassium from certain foods than from supplements. There is prescription strength potassium, but a physician will probably want to test potassium levels before prescribing.

I had not heard of a connection between potassium and ITP. Something new?

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Questions for Those Experienced with ITP 4 years 1 week ago #48979

  • Ann
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I think there is too much evidence to doubt that the TPOs especially Nplate, cause a remission in some patients. There are theories about T-regulatory cells readjusting and of antibody tolerance. It will be interesting to see how it all develops.

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Questions for Those Experienced with ITP 4 years 1 week ago #48982

  • EmilyK
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Deln
I feel like you want an answer as to how to cure your ITP without the potential of on going treatment and I don't think such an answer exists. You have to decide whether a weekly shot or daily pill is worth trying with the understanding that, if it works you might have to stay on that regime but lead an otherwise symptom free "normal" life. Or you can try some other treatment or do nothing and see what happens. There is no known cure for ITP and most people do not have a remission without treatment. No matter how many times you ask for suggestions as to how to stop all treatment and cure ITP, I do not think such an answer exists. You may want to seek a homeopathic practitioner as I suggested before if you want to look at alternative treatment.
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 1 week ago #48983

  • jimingeorgia
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With Prednisone (and, for me five years prior in my first ITP episode, Dexamethesone) after about ten or twelve days I can actually feel what I believe is the blood coursing through my veins! It's only noticeable to me when relaxing very quietly--which is, admittedly, NOT very often while on Pred or Dex--but it's almost like a tiny electric current.

For me sleep only comes while on the couch with the television on, watching something not too interesting (but that I tend to follow along, like a crime-drama or reality show that keeps me thinking).

THAT puts me to sleep, eventually. I'd rather do that that mess with Beta-blockers, extra medication for sleeping, or alcohol. I may choose to celebrate with a beer or glass of wine, maybe, after another five years of remission.

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Questions for Those Experienced with ITP 4 years 1 week ago #48984

  • DelnStyle
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I wonder if perhaps tapering a lower dose of Decadron would be advisable?

I'm on my last dose today of 80 mg total. Isn't Decadron 6x as strong as prednisone? Perhaps taking 10 mg Decadron daily will help keep me stable for awhile? Or maybe I just do these 4 pulses in total and then try NPlate?

I just don't know if Rituximab is worth the shot. 4 weeks of treatment and it may not pan out at all?

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Questions for Those Experienced with ITP 4 years 1 week ago #48985

  • tamar
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I think there's probably a reason decadron is given in pulses (larger doses). DeIn, Emily is right that you seem to be all over the place with wanting to try treatments that are non-standard when you haven't tried the standard ones. You can, of course, do whatever you want to do in consultation with your doctor, but no one here is going to be able to provide encouragement for you to do that. There's a reason the standard treatments are the standard treatments.

Have you heard the expression that when you hear hoofbeats, you should think "horse" not "zebra"? You seem to think your ITP is a zebra. The advice you'll get here is to assume it's a horse in the absence of stripes.

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Questions for Those Experienced with ITP 4 years 1 week ago #48986

  • DelnStyle
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Hi all,

I know I'm just feeling upset/ depressed. I can tell the Decadron has gotten my numbers up, just based on my symptoms and my healing of small things.

While its good that Decadron is my "rescue" treatment so to speak, I know I can't be on steroids long term. Thus, I'm anxious/annoyed/stressed about what the next options are. My guess will be one of the following:

1. Two more Decadron courses over the next 3-6 weeks, (assuming my platelets crash back down in about 12 - 14 days time.

2. Rituximab

Don't know. At 50% response rate, it could be worth the shot. Since it may put me in remission without being on a "never ending maintenance drug, 4 weeks of it might be worth the risk that it doesn't work.

3. Nplate

Seems to be my last real standard option, and the one many of you have advocated and found success with. As I started, with this one, I feel like I'm signing up for a long term drug that I may be on for years. We don't know the long term side effects of this drug either, which presents concerns.

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Questions for Those Experienced with ITP 4 years 1 week ago #48987

  • tamar
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I imagine this has been mentioned before, but here it is again now that you know dex works: www.haematologica.org/content/99/7/1264

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Questions for Those Experienced with ITP 4 years 1 week ago #48988

  • DeeDee Marie
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Tamar,
Thanks for sharing the article. I've also read about using the combination of dex and Rituxan and I think it would be worth a try over using Rituxan just alone.

I can see why Deln is scared. I have other blood diseases in my family and I did get a chance to talk to Dr. Brussels some years ago (off the record). And, he had advised me not to use TPOs (ever). But, I'm not so sure now. With the way I see Rituxan being used so much and many multiple times, I'm thinking this could be more dangerous than N-plate. If my time comes up for a decision--I'm not sure what I will do. I do plan on attending the PDSA conferences again in a couple years to see what they have to say. And, I think I've read that 1 in 100,000 can get ANA (leukemia) with Rituxan. That is what my paperwork said when I was signing up for a trial of a medication similar to Rituxan--just milder.

Deln--I'm just surprised that they are giving you 80 mg of Decadron. I only had the 40 mg a day (for 4 days). This could make you depressed and anxious.

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Questions for Those Experienced with ITP 4 years 1 week ago #48989

  • DelnStyle
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Thank you for your responses. I have no doubt that I'm "depressed" right now. I have one more Decadron dose to take tonight then I should be okay for another 10-14 days.

I'm just very tired of this process. It's been going on 3 months now. I know I haven't tried some of the other stuff yet, like Rituximab and NPlate, I was/am hoping this would clear itself out.

I'm just feeling at a loss. I feel like I won't get any 'normalcy' in my life back. Sure, maybe taking NPlate will get me out of critically low Under 10,000 platelet range, but then I'm going into a Doctor office once every 7 days for who knows how long?

Oh speaking of Nplate, for those who have gotten it, how long does it take to be dosed with it? Is it literally just a little shot that goes into the belly area or is if like a pumped hour or two infusion under the skin?

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Questions for Those Experienced with ITP 4 years 1 week ago #48991

  • Ann
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Nplate is a thirty second injection. When I had them in the hospital they used to do them in the arm which I found very painful. When I self injected I did it in the stomach area and found it to be painless. I have no idea how it's done in other hospitals!
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Questions for Those Experienced with ITP 4 years 1 week ago #48995

  • EmilyK
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Deln
Treatment choices are difficult and need to be made in conjunction with your doctor. Rituxan can take up to 12 weeks from the first treatment to work. You need to be able to be patient with that time frame. I had no response at all. I had a short try with Nplate. The needle is tiny and had no pain at all to the shots. I am a total wimp when it comes to pain. I was totally depressed on steroids and wish i never had to use them. They mess with your mind. The idea of on going Dex pulses for you seems counter productive. They mKe you feel horrible and have no long term impact, at least so far. Good luck in making decisions. Each one has different risks and none are guaranteed to work at all or for any length of time.
Diagnosed Jan 2015 at age 50 with 13,000.
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Questions for Those Experienced with ITP 4 years 1 week ago #48998

  • DelnStyle
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Thanks Emily. So I see you did take Rituximab. If it may take 12 weeks, how have you and your doctors decided that it has failed you on your part?


How is NPlate working for you then so far?

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Questions for Those Experienced with ITP 4 years 1 week ago #48999

  • EmilyK
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Deln
It has been well more than 12 weeks since i had the rituxan. I finished my last infusion in early April. My platelets kept dropping as my prednisone dropped. They went from the 90000s down to 24000. I started promacta and they went up in about 4 days. I started at 50mg and then down to 25 mg and am now at 12.5 mg and will see where they are on Monday. They went up to 500000 on the 25 mg and we are still trying to figure out the right dosage. My doctors think promacta may avoid some spikes in numbers since you can take it every day or switch to every other day etc vs a once a week shot. I had the NPlate before rituxan. In hindsight I do not think my doctor gave it a long enough chance to work, but when i dropped to 4000 after the 4th shot, we started the Rituxan.
People take blood pressure medicine every day or manage insulin daily. I feel the most like myself since this whole nightmare started now that I am on 5mg of prednisone and take the promacta. I would love to go back to my drug free self, but if not and the promacta allows me to do all my normal activities, that is fine too. I have been really lucky in this disease. I react really well and quickly to steroids and other than bruising and bloody noses, I have no other bleeding issues or symptoms ( so far). I wanted to die when i was on high levels of steroids. I could not sleep, I could not go to the gym, I stopped eating, I cried all the time, I could not think clearly I was completely depressed. Even at 7.5 mg of prednisone I feel shaky and "off." I cannot wait to be completely done with it. Feel fre. To send me a private email and i am happy to give you my number if you want to talk.
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 1 week ago #49000

  • EmilyK
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I should have also said that for some people they react to rituxan fast, but that the common thought is if you do not have a response after 12 weeks, it probably isn't going to work.
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 1 week ago #49007

  • DelnStyle
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6/8/2015

Good morning everyone. So my last dose of Decadron was Saturday evening. Yesterday, I just felt 'floored' so to speak. So tired, not much energy. I wanted to sleep a lot. I am certainly very 'moody' and quick to anger, etc...

I'm noticing that my nose is a little stuffy and could be an indication that my immune system is certainly suppressed. So I'm not necessarily feeling my best. Just feel tired and lack energy, run down.

Tomorrow I get some counts checked. I would expect an increase, of course, above 25,000 but who knows, right?

Maybe that NPlate injection may be the way to go after all. I will say that these past three months of steroids are really starting to wear on me.

Or maybe I just take nothing? Deal with a couple of blood blisters, LoL.

I assume if NPlate works for me, like the majority of people, then perhaps I would only need a very small dose just to get me about 30,000 platelets?

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Questions for Those Experienced with ITP 4 years 1 week ago #49008

  • DeeDee Marie
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Deln,

If I had taken the 80 mg of Decadron, I would have been "floored" too! Why did your doctor decide on the 80 mg instead of the 40 mg? I've actually never heard of the 80 mg before. I would try the 40 mg pulses again, but only because "something" gave me a 5-year remission. I say something because there is also: drug induced thrombopenia. And, there is a slight chance that I could have that (not quite sure). I had stopped taking a drug known to reduce and lower platelets at the same time my platelets started going up.

My doctor agrees with me, too. Said there is a chance that the meds could have caused my episode of ITP. The first time I got ITP, I might have had some quinine (I was in Hawaii when I got my ITP). But, you never know with ITP, so I'm not going to count on that.

But, you remember I mentioned that after your last pulse, you wouldn't be able to get out of bed? That's how I felt (especially by the time I got out a couple of months with the pulses).

I know after all this the N-Plate doesn't sound so bad!! There's a chance if I relapse, I might not treat for a while. I made it a month or more feeling fine with hardly any bruises or petachie. Even when I was at "1" I was felling okay. But, you are really young and have a family (?) and the N-Plate sounds like a plan as it may be covered by your insurance.

Good luck on your platelet count!! And, hope you feel better soon!

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Questions for Those Experienced with ITP 4 years 1 week ago #49012

  • Sandi
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Deln:

The goal with the TPO's is to use the lowest possible dose to keep the patient between about 40k - 60k. They should not use a dose high enough to normalize counts. Once a patient becomes stable on Promacta, they do not have to go to the Dr. weekly for counts. It can be one or two times a month.

If you've read Emily's story, you will see that she went through exactly what you are going through now. She was tired of the whole thing...most of us were at that point too in the beginning. Those of us who have been there are trying to tell you the quickest route to get your life back to normal. We're really trying to help. Emily has a point about many people having to take a pill daily for life. My daughter was on thyroid meds for life at the age of 20. I take about 9 to 10 scripts a day and will for life. You just do what you have to do in life and you do have a very good chance of getting off of it some day.

All of the treatments have potential side effects, they are all band-aids, none have 100% success rate. Remember back in the very beginning when you wanted to just live with low counts and blood blisters and we discouraged that? We still do. :)

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Questions for Those Experienced with ITP 4 years 1 week ago #49022

  • DelnStyle
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6/9/2015:

Went to the Dr. today, and had blood drawn. Counts at 22,000. About what I had expected, but my guess is they will be dropping within the coming 3-7 days and ultimately get back down to 2,000.

I have an appointment on 6/15 which may shed more light on the true next step. Likely either another Decadron, Rituximab, or NPlate. I guess we will see.

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Questions for Those Experienced with ITP 4 years 1 week ago #49023

  • Ann
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Twenty two is a great count. Get into the mindset that that's your count now until you get another test. Don't be thinking that it's going to go down. That's what I do. My last count was the fantastic 161 and I'll assume it's that until I get another count in 3 months. I only get counts so frequently because I see the immunologist. Not seeing the haematologist for 9 months.

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Questions for Those Experienced with ITP 4 years 1 week ago #49025

  • DelnStyle
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Ann,

Thanks, that is a 'positive' mindset to have. I appreciate your comments. I can always hope for the best. Definitely feel down in the dumps right now.

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Questions for Those Experienced with ITP 4 years 1 week ago #49027

  • Rob16
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Deln,

The Kübler-Ross model has five stages, and depression is the last step before acceptance. I am sorry you are down in the dumps, but you are well on your way to acceptance! and that is a much better place to be. Hang in there.

Rob

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Questions for Those Experienced with ITP 4 years 1 week ago #49032

  • Sandi
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I did the same thing that Ann did. Assumed my count was the same as my last CBC until I heard differently. It works well. If I had symptoms, I'd get a count done sooner. I never went more than once a week though no matter what the count was.

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Questions for Those Experienced with ITP 4 years 1 week ago #49038

  • DelnStyle
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Thanks guys. Depression is tough in general. I now understand more what people who struggle with depression desk with. It's awful and nothing makes you happy like things used to.

Also, I'm positive that the steroids are magnifying this issue.

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Questions for Those Experienced with ITP 4 years 1 week ago #49039

  • DeeDee Marie
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Deln,

Rob is right. Once you get to the stage of acceptance, your life will be better. I know a lot of people who live with low platelets (for those who don't have any other choice) and they just go one with their life. You still need to try and enjoy yourself and do things with your family. It could just be the steroids like you mentioned. I don't think I could ever take Prednisone again (Decadron wasn't as bad for me). I couldn't sleep or think while taking it. The lack of sleep made me almost haluccinate. I don't think I will ever take it again, unless just for a couple of days. It will get better.

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Questions for Those Experienced with ITP 4 years 1 week ago #49040

  • mrsb04
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Positive Mental Attitude is needed. 5mg Prednisolone a day and the fostamatinib trial ( no idea if that is working yet next count on Monday), I feel absolutely fine on a count of 25. I've given up worrying about counts. My consultant says counts are not really with bothering about...if no spontaneous bleeding symptoms then nothing to worry about.

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